So glad to hear about the progress. You might try describing the care home as a convalescent home. That's rather old fashioned but still a good concept. It sounds more hopeful than a care home. Most people realise that statistically few people move out of a care home alive, so I can understand why people fear them.Thank you to everyone who has replied to my recent posts. Things have moved on today and I finally have a glimmer of hope. My daughter contacted the therapist who had spoken to me about my husband. She felt that the therapist really understood the situation and how I am feeling. She said the bungalow was clearly unsuitable for him because of his risk of falls and that he has no understanding of how his condition impacts me. She recognised that I am exhausted and unable to cope with him at home. She explained that whilst there is a procedure to follow regarding trying all appropriate avenues before recommending residential care she feels that every case needs to be looked at individually. She has requested a mental capacity assessment and has made as strong a case as she could to all the other professionals involved that he be referred for discharge to assess in a care home or nursing home. I have since spoken to the ward sister who informed me that the referral had been completed and would be picked up by a hospital social worker. I'm not quite what happens after this but I know the wheels have been set in motion. I have had a conversation with the community social worker who has assured me that she can see on the system that the referral has reached the hospital social worker along with all her records of what has been tried. I have also spoken with a specialist dementia nurse who said this is the best way forward, it is difficult to assess dementia patients properly in a hospital setting, she has promised to chase the referral on Thursday and contact me again to update me.
So I am feeling happier though not counting my chickens yet.
I have asked the ward sister not to tell my husband about all this until it is all arranged as he is still saying he hopes he will be home this week. I've told him they need to get him well and he needs to be able to walk otherwise he can't manage at home.
Fingers crossed things will move on quickly from here.
Mmm you need to put your foot down @yorkie46 make it clear you weren't informed of what happens and to be honest i would call the ward to make the point you weren't informed. You always have to remember healthcare professionals in the UK are paid well for the work they are supposed to do!Well I knew the confidence yesterday was misplaced. I hadn't heard from anyone today so I phoned at 4pm to see how he is and to ask about visiting. I was told eventually that he had been moved to a different ward. I was annoyed that I hadn't been informed and even more annoyed when I discovered he had been moved last night. Phoned the new ward and was told 'he's doing well. He's medically optimised and he's going home with a care package'. At this point I lost it. I said he's not coming home but the ward sister just kept saying he's had a capacity assessment and he has capacity, he owns his own home and therefore he has the right to live there. I told her I'd been talking to people yesterday about discharge to assess. I asked who had done the capacity assessment and what questions they had asked, she said it was the doctor but couldn't tell me what he'd been asked about. She said he's not confused and just kept repeating that he has capacity and he has the right yo return home. I told her I couldn't manage him at home any more. She said 'you won't have to do anything, the carers will get him out of bed and deal with all his personal care'! I said oh so they're going yo be here all day are they. She said 'no not all day but 4 times' I said so who deals with his needs in between those 4 times then? I'm afraid I didn't handle it very well and put the phone down. I was just so angry. My daughter phoned a bit later and went through all the things she had spoken to the therapist about, she said it sounded like the sister knew nothing about these things. Sge didn't even know he had been admitted from the care home. She also asked that he isn't told yet that he can go home. The ward sister said she couldn't lie to him but my daughter said no don't lie to him just tell him he will be able to come joke when he's fit for discharge. Because I was so angry I didn't ask about his mobility or about visiting. I'm completely deflated again. This is a repeat of last August.
I was thinking the same as @Violet Jane but I do not see any reason to drop off the keys. As he is so capable let him make his own arrangements to obtain the keys! It is the nuclear option but I agree with others that you are going to have to stand your ground and I would certainly reccommend seeing a solicitor very soon.Absolutely awful, and an illustration of how dreadfully family carers are treated. Would you consider getting a solicitor to challenge this? Alternatively, your only option appears to be to withdraw completely by leaving the family home (perhaps to stay with your daughter) and informing SS and the ward that you will not be there when your husband returns. Tell them that there will be no food and so SS will have to buy some. This is the nuclear option but what else can you do? Make sure that you drop off keys at the hospital before you leave so that you can't be accused of barring him from his home.
I hope that SS gets the message. I really feel for you.
I just don't know what to say @yorkie46 -words fail me but this is how it is, huge pressue to get patients out but what happens to them when they leave is an entirely different matter not to mention you have repeatedly said you can't cope anymore. Hopsitals do have to explain re-admission / failed discharge so thats one option if he does come home and it doesn't work out, but I am going to suggest you put your foot down and refuse to have him back home, you do have some say in this and from what I have read you have tried your best to be 'reasonable'. I am sure others who have experienced the same thing or similar things will be able to make some suggestions. But hang in there and your daughter sounds fab.Well it's been another emotionally draining day. My husband has been moved yet again, now into a side room which I eventually found out is because he has MRSA! The original therapist now not involved. My daughter spoke to physio on new ward. She's (my daughter) been brilliant and has spoken to people when I've just been too upset to do it. She tells it like it is! Physio promised to look into what's happening and get back to her but of course she didn't. Meanwhile I had a call from the specialist dementia nurse who was toeing the party line. He's had an MCA, he has capacity, wants to go home, he has a right to do that. She said the ward sister wants me to talk to him on the phone. She said I could have him home but refuse to care for him and leave it to the carers. If he falls just call an ambulance. Doesn't that amount to neglect? These people live in some other planet. My daughter phoned to try to speak to physio again but she had left, the call was taken by the discharge officer. She went through all the issues yet again (why do we have to keep repeating the same things). At the end yet again she was told she would look into it and speak to my husband. Apparently he has refused D2A. My daughter was just explaining this to me on the landline when my mobile rang. It was the ward sister. Nothing to worry about I just need to inform you that your husband has just slipped off the bed when trying to stand up!!!!!! He hasn't hurt himself but I'm waiting for the doctor to see him. I asked how he could come home if he's falling, told her I can't manage him at home and I'd been told if he came home I had to refuse to help him. She said I need to be straight with him and tell him he has to wait for carers and if he falls call ambulance! I said I understood she wants me to speak to him about discharge, she thinks I need to. During the course of this conversation which my daughter was listening in to I discovered that they have now decided to redo the MCA and also do a cognitive assessment. Wonder why?! I also discovered that he is still needing 2 nurses to get him out of bed yet they are happy to send him home to me. The decision my daughter and I have made is to wait to hear back from the discharge officer and for the result of the assessments before I speak to him. I will write down what I want to say to him. My daughter will be with me when I speak to him on speaker phone and will record the conversation on her mobile. I'm going to have to tell him that when he's ready for discharge he can't come home because he can't walk without 2 people and most of the time it will be me or nobody here. I can no longer struggle to help him on my own without rusk of injuring myself.
Watch this space.
You are so right @Violet Jane there's good reason from what we have learned about this case to think that mental capacity has not been properly assessed according to law. Assessment of capacity involves testing understanding of relevant information. Hospital staff may not have much understanding themselves of the domestic circumstances of the patient, making it difficult for them to carry out the assessment at all.I really do question the quality of these mental capacity assessments. Nearly every PWD will say that he wants to go home. Do social workers really probe to see whether the PWD understands what his limitations are, how much support he needs, whether that support can be provided, what the effects on family carer(s) are and what the risks to him returning are?
There is of course another problem: the social worker carrying out the assessment is only interested in the PWD and nobody else.